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Project Alive Community Form

In order to develop programs effectively and to obtain the funding necessary to provide these services for free to Hunter syndrome community members, we need to collect important information from you. Please fill out the Project Alive Community Form below to access all of our offerings. You will also be notified when new services are launched.

Your information will never be shared. These demographics will only be used as data points. Your name or any other personal information will never be shared outside of Project Alive. This survey is strictly confidential.

Community Form

Medical

From understanding complex medical terminology to navigating the emotional impact of treatments and care, this section equips siblings with the resources they need to stay informed and empowered. Learn about the medical challenges of Hunter syndrome, explore treatment options, and discover ways to support your sibling through every step of their health journey.

MPS II 101 - HSCC 2025

Board certified pediatrician and MPS II parent Katey Hoffman gives a comprehensive presentation on Hunter syndrome.

Gene Therapy in MPS II - HSCC 2025

MPS II Biomarkers - HSCC 2025

Neurocognitive Testing - HSCC 2025

The impact of Hunter syndrome (mucopolysaccharidosis type II) on health-related quality of life

The article titled "The impact of Hunter syndrome (mucopolysaccharidosis type II) on health-related quality of life," published in the Orphanet Journal of Rare Diseases in July 2013, examines how Hunter syndrome (MPS II) affects patients' health-related quality of life (HRQL). Utilizing the Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale (HS-FOCUS) and other validated questionnaires, the study assessed both patient and parent perspectives prior to enzyme replacement therapy. Findings revealed significant impairments in physical function and daily activities, with notable challenges in psychological aspects such as self-esteem and family cohesion. When compared to other pediatric populations with chronic conditions, individuals with MPS II reported consistently lower HRQL scores. The study underscores the profound impact of MPS II on both physical and psychological well-being, highlighting the need for comprehensive care approaches

MPS 2 (Hunter syndrome)

MPS II is one of a group of seven hereditary metabolic diseases known as the mucopolysaccharidoses, which in turn, are part of a group known as lysosomal storage disorders. Lysosomes function as the primary digestive units within cells. Enzymes within lysosomes break down or digest particular nutrients, such as certain carbohydrates and fats. In individuals with MPS disorders, including MPS II, deficiency or improper functioning of lysosomal enzymes leads to an abnormal accumulation of certain complex carbohydrates in cells (mucopolysaccharides, also known as glycosaminoglycans) within various tissues, such as the skeleton, joints, brain, spinal cord, heart, spleen, or liver.

Muenzer MPS Center

The Dr. Joseph Muenzer MPS Research and Treatment Center is focused on treating patients in the mucopolysaccharidosis (MPS) family of diseases and leading research in this area. The work is led by world-renowned MPS expert, Joseph Muenzer, MD, PhD, Bryson Distinguished Professor. Our team is dedicated to developing new avenues of treatment for children and adults with MPS, including clinical trials to test new forms of intravenous enzyme replacement therapy as well as alternative therapies, such as gene therapy and intrathecal drug delivery devices.

Clinical Trials & Studies

Learn more about active clinical trials here. This page lists active clinical trials for MPS II. This page serves as informative only, Project Alive does not endorse any particular clinical trial. To find additional information, visit www.clinicaltrials.gov and search "mucopolysaccharidosis II" and look for trials that are recruiting. Once you click into a study, you will find the clinical trial site information near the bottom with contact information. Reach out to the listed contact to discuss the details of the trial.

MPS II Active Clinical Trials

This page lists active clinical trials for MPS II. This page serves as informative only, Project Alive does not endorse any particular clinical trial. To find additional information, visit www.clinicaltrials.gov and search "mucopolysaccharidosis II" and look for trials that are recruiting. Once you click into a study, you will find the clinical trial site information near the bottom with contact information. Reach out to the listed contact to discuss the details of the trial.

Gene Therapy in MPS II - HSCC 2025

MPS II Biomarkers - HSCC 2025

Blood Brain Barrier Challenges & How Science is Advancing Treatment - HSCC 2025

Behaviors

Understanding behaviors is key to supporting a sibling with Hunter syndrome. This section offers insights into common behaviors, strategies for positive interactions, and tips for building strong sibling bonds.

Accommodating Behaviors in the Classroom & Clinic, Presented by Julie Eisengart, PhD, LP

Julie Eisengart, PhD, LP, the Associate Professor of Pediatrics of the Neurodevelopmental Program in Rare Disease at the University of Minnesota, presents on Accommodating Behaviors in the Classroom & Clinic at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Neurocognitive Testing - HSCC 2025

Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials. The new edition and all archived editions and articles are completely free but are only available online.

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—to improve health care services and policies for children.

NeuroJourney uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.

Therapy

Therapies play a crucial role in supporting children with Hunter syndrome. This section provides siblings with a guide to the types of therapies their sibling may receive, including speech, physical, and occupational therapy, and how they can be part of the progress.

Therapy for Neurodegenerative Disorders, Presented by Lauren Newhouse, OTD, OTR/L, SWC

Lauren Newhouse, OTD, OTR/L, SWC, a pediatric occupational therapist, presents on Therapy for Neurodegenerative Disorders at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Speech Language Pathology Webinar 2025

Ashly Wiebelt, M.S. CCC-SLP, a seasoned speech-language pathologist and mother of a child with Hunter syndrome, will be featured in Project Alive's April webinar. This special session will focus on speech-language pathology strategies tailored for boys with Hunter syndrome, also known as MPS II. With over 17 years of experience in early childhood intervention, Ashly brings both professional expertise and personal insight to the discussion. She is a dedicated advocate within the Hunter syndrome community and serves on the board of Project Alive. In the webinar, Ashly will share effective tools and best practices for supporting communication development in individuals with Hunter syndrome. Topics will include alternative communication methods and how these approaches may evolve as the disease progresses.

Aging in Hunter Syndrome

The impact of Hunter syndrome on health-related quality of life

This research examines how MPS II affects patients' health, well-being, and life expectancy, highlighting the significant burden the disease places on individuals and their families.

STUDY: Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience

Project Alive has funded the "Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience" study. The study survey will be live soon. Please stay tuned for the study link. The attached file is the official study poster presented at WORLDSymposium in February, 2024.

National Council on Independent Living

The National Council on Independent Living (NCIL) is the longest-standing national cross-disability, grassroots organization dedicated to the rights and full inclusion of people with disabilities. Established in 1982, NCIL represents numerous organizations and individuals, advocating for systemic change to enhance the human and civil rights of people with disabilities across the United States. They offer resources, training, and advocacy initiatives, and host events such as their Annual Conference on Independent Living.

Education

Education is a key part of a child’s journey with Hunter syndrome. This section provides siblings with an overview of the learning challenges their brother or sister may face, tips for navigating the special education system, and ways to support their success in school.

This workshop discusses all things IEP. Experienced IEP advocate, Lindsay Vose, presents a step by step guide to IEPs.

IEP Workshop Slides

Federal Education Rights

Speech or Language Impairment Eligibility

Speech Language Pathology Webinar 2025

Ashly Wiebelt, M.S. CCC-SLP, a seasoned speech-language pathologist and mother of a child with Hunter syndrome, will be featured in Project Alive's April webinar. This special session will focus on speech-language pathology strategies tailored for boys with Hunter syndrome, also known as MPS II. With over 17 years of experience in early childhood intervention, Ashly brings both professional expertise and personal insight to the discussion. She is a dedicated advocate within the Hunter syndrome community and serves on the board of Project Alive. In the webinar, Ashly will share effective tools and best practices for supporting communication development in individuals with Hunter syndrome. Topics will include alternative communication methods and how these approaches may evolve as the disease progresses.

The Arc is an organization dedicated to promoting and protecting the rights of people with intellectual and developmental disabilities. Their mission is to ensure full inclusion and participation in the community throughout individuals' lifetimes. They focus on advocacy, grassroots initiatives, and providing resources on various aspects of community life, such as education, employment, healthcare, and housing. The Arc also offers digital skills training, annual events, and a network of chapters across the U.S. to support their cause.

Disability Rights Education and Defense Fund

Disability Rights Education and Defense Fund (DREDF), founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. Our mission is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.

Accommodating Behaviors in the Classroom & Clinic, Presented by Julie Eisengart, PhD, LP

Julie Eisengart, PhD, LP, the Associate Professor of Pediatrics of the Neurodevelopmental Program in Rare Disease at the University of Minnesota, presents on Accommodating Behaviors in the Classroom & Clinic at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Siblings With a Mission

Siblings with a Mission is an international organization dedicated to serve and support siblings of individuals with special needs. The organization provides siblings and family members an opportunity to share their stories, offer suggestions, and make friends with others who understand. We strive to spread awareness and offer support through our story columns, resource database, monitored video conversations, web chat forums, sibling workshops, and family conferences. By sharing stories, we hope to show siblings that they are not alone and that there are other people who understand. We also hope to teach the community what it is like to live with someone who has special needs.

Siblings With a Mission

Support

Hunter Syndrome Awareness Week - How to Get Involved

Hunter Syndrome Awareness Week: How to Get It Acknowledged in Your Community

Sibling Support Bibliography

The Sibling Support Project has published books, articles and papers about, for, and largely by, siblings of all ages. We recognize that a great place to learn about and “meet” siblings is on the pages of books. We are dedicated to expanding opportunities to promote awareness and understanding of siblings and siblings' issues through the written word.

Extraordinary! A Book for Children with Rare Diseases

Written collaboratively by mother and son, Extraordinary! A Book for Children with Rare Diseases opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease. The gentle lessons draw on the co-author's firsthand experience of growing up with an ultra-rare disease and offer young readers a framework for understanding personal identity and how their rare diseases can help shape it in positive ways. Family members and caregivers are invited to share in this conversation and to customize the reading according to each young reader’s developmental needs.

Views from Our Shoes

In Views from Our Shoes, 45 siblings share their experiences as the brother or sister of someone with a disability. The children whose essays are featured here range from four to eighteen and are the siblings of youngsters with a variety of special needs, including autism, cerebral palsy, developmental delays, ADD, hydrocephalus, visual and hearing impairments, Down and Tourette syndromes. Their personal tales introduce young siblings to others like them, perhaps for the first time, and allow them to compare experiences. A glossary of disabilities provides easy-to-understand definitions of many of the conditions mentioned.

Communicating Effectively and Compassionately to Help Siblings Cope

The CPN Siblings Cope Guide is a resource for parents navigating the emotional challenges siblings face when their brother or sister has a serious illness. It emphasizes the importance of open communication and validation of siblings' feelings, including common reactions like feeling invisible, jealousy, guilt, pressure to be perfect, and fear of the future.

Family Resource Center on Disabilities (FRCD)

312-939-3513 info@frcd.org The Family Resource Center on Disabilities (FRCD) stands as a beacon of support and empowerment for families in the Chicago Metropolitan Area who have children with disabilities. Dedicated to ensuring that every child receives the quality education and services they deserve, FRCD offers a wealth of resources and guidance to parents navigating the intricate landscape of special education. Serving eight Illinois counties – Cook, DuPage, Grundy, Kane, Kendall, Lake, McHenry, and Will – FRCD is a vital partner in the journey towards providing children with disabilities the opportunity to lead productive and independent adult lives.

Hunter Syndrome Foundation

The Hunter Syndrome Foundation is a U.S. 501(c)3 non-profit corporation (IRS Tax ID# 46-4296623) with a mission to fund research, support families, and raise awareness of this rare disease. The Foundation was founded in 2013 by parents with children affected by Hunter Syndrome. Hunter Syndrome or Mucopolysaccharidosis Type II (MPS II) is a rare genetic disorder that slowly destroys the body’s cells. This is a rare condition affecting 1 in 150,000 males. There is currently no cure, and the disease is progressive and life-limiting.

MPS Superhero Foundation

At the MPS SuperHero Foundation, we are driven by a passionate commitment to making a difference in the lives of those affected by MPS (Mucopolysaccharidoses). Our core bylaws reflect our dedication to raising awareness, funding crucial research initiatives, and providing vital support to families facing the challenges of MPS.

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—to improve health care services and policies for children.

Cozi is a highly rated family organizer app designed to keep busy families on the same page. It can be especially helpful for siblings who want to stay involved in their brother or sister’s care by providing a single, shared platform for coordinating appointments, tracking medications, and managing daily routines.

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Sibshops!

Understanding Sibshops!

Virtual Sibshops are fun, interactive workshops that support the siblings of children with disabilities or medical conditions. Designed for kids ages 8–13, these sessions offer a safe space to share experiences, build friendships, and learn healthy coping skills. Led by trained facilitators, each 60–90-minute session includes games, discussions, creative activities, and tools to help siblings navigate their unique family dynamics—all from the comfort of home.

In the Zoom Room: What Siblings Want

A recording of CPN's In the Zoom Room on what siblings want, featuring four bereaved siblings reflecting on their experiences. Gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother or sister with a serious illness shaped them.

Communicating Effectively and Compassionately to Help Siblings Cope

The CPN Siblings Cope Guide is a resource for parents navigating the emotional challenges siblings face when their brother or sister has a serious illness. It emphasizes the importance of open communication and validation of siblings' feelings, including common reactions like feeling invisible, jealousy, guilt, pressure to be perfect, and fear of the future.